this post was submitted on 20 Jul 2025
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Heading back down the beach today to tackle the unmentionable plant.
Had a few run ins w/ ol' girl over the last few days so time to give it a rest and let ol' boy decide what's next. Her weight has gone from 53kg -> 42kg over 5 weeks and I just cannot get that to turn around because of refusal. She has it all there, food, supplements, hubby is a doc, someone willing to cook whatever whenever. Makes me feel pretty bad that I just couldn't do it.
So pretty much looking at a PEG (feeding tube into tummy bypassing mouth / throat). Sounds bad but it's not really, the alternative is far worse.
Can't win them all.
I've been in that situation and sometimes you just go a feeding tube. Because the whole physically eat mechanism is just...rooted. It's not permanent (behold, my fat arse!) but I found during chemo that my whole desire and eating thing was just...no. And forcing it just made me feel sick.
Feels. Dis ain't good. Long distance hugs and give that plant a smacking.
It occurs to me that the ancient ad - Did you have a good weekend? No, forgot the aeroguard - has an entirely new meaning now. This pleases me.
oh gees
she must be so weak by now but still stubborn, ( does she even know what she wants and what she's protesting? )
so many hugs
She does, so i cook it, then she can't eat it or if she can she's no where eating near enough of it. I think of something else and she doesn't want it because she didn't ask for it.
I really needed her to not refuse supplements as that's the safety net.
Are there any appetite stimulants (ie medication) that might work? Or is it something else?
I’m sorry you and she are going through this
There are but it's another layer of drugs that I'm not sure she'll be receptive to. I think the main problem is her mouth and pain. She has a bunch of mouth numbing things but... refusal.. grr.
Oh that explains it. If going for a tube a temporary nasogastric tube is an option that’s less scary or permanent than the abdominal stoma route.
It depends but thin strained soups can possibly go through the tube as long as the food is going to the stomach for digestion. If directly into the small intestine probably not
I meant her long term wants or is she just living in the now ? It seems to me she just wants to assert herself , have some way of having say so in her life, and eating and not eating is one way she can do that.
Maybe a way out of that is everyday ask her opinion about other things, that way she might be less defiant about food.
We do. That's one of the harder things with this non-amnestic MCI. She remembers everything, has her opinions, remembers what's happening currently in the news. There's an aloofness there that is difficult to overcome when in conversation.
The eating issues relate to a series of mouth ops in the past and now poor decision making about what she can (or will) eat. Only thing that slows that MCI business is eating and exercise. It's basically compounding. Other thing with the MCI stuff is stress and anxiety. Ol' boy and I are stressed about not enough food, makes her stressed, makes things worse. If ol' boy and I aren't banging on about food, she eats less which further... It's fucked.
E: In terms of long term when asking her it's day by day.
Would low pressure snacks like tea and biscuits be palatable? Egg custard? Creamy soups?
(Sorry if this is unsolicited advice. I seem to be giving a lot of it lately)
I'll take any advice atm so please don't say sorry I'm thankful for everyone here chiming in. She's had so much of it from so many doctors. Was resetting her medicare app the other day and it's just insane how many appts she's had.
Creamy soups seems to be the only thing atm.
That’s good. I’ve really been sticking my oar in lately.
Broccoli and cheese soup might be a winner? Can you put protein powder in? I found a thing https://thegeriatricdietitian.com/high-calorie-soups/
A soup mug/thermos mug with a sipping hole might make it easier than a bowl and spoon too, to hold in her hand and take an occasional mouthful. It will help her do it herself and keep it warm if she needs to take her time.
I’d also be delicately enquiring about any nausea, bowel troubles or quickly feeling full. Gastroparesis can happen after surgery and she could try pro kinetics if the doctor thinks it’s safe.
Does she have a dietician or a gastroenterologist? It’s unfair if you’ve been left to manage this mostly yourself.
Oh missed this reply sorry.
The thermos thing is a really good idea. I'm going to try that. Thank you.
Thankfully asking about nausea / bowel things is pretty standard.
Quickly feeling full is a struggle. To my mind with how little she's eating it happens very quickly.
I think one of the problems is just how many people she's seeing. Problem is they don't all speak to each other.
Ol' boy is the one managing it on a macro level, but I'm trying to get everything to fit together day to day as it's a bit chaotic.
For example, w/ her eye pressure meds (this is to prevent total blindness), can only take a few of them with food, but they interact w/ each other so you have to space them out. When you have random food refusal.. it's just super difficult to get it into a schedule. It's a bit frustrating lol.
Believe me I know it. Food refusal vs med schedule…
Maybe just a spoonful of peanut butter. If there’s difficulty swallowing (or it would be painful for her mouth to manage) then try a bit of peanut butter thinned with yogurt, or just straight up yogurt. Even a shot glass or tablespoon worth of a soft food is at least something. Vaalia do tiny tubs or there are yogurt pouches she can hold by herself.
If she doesn’t do sweet stuff plain yogurt is an option, or baby food is another thing that comes in pouches. It’s not dignified to eat baby food but she will have the option to feed herself. There’s also thinned cream/cottage cheese or different types of dips.
Also she doesn’t have to finish the whole thing the same day. A tub or jar can last a few days in the fridge if you cover it and use a clean spoon each time. A pouch can be squeezed onto a spoon.
Ensure comes in neutral flavour now if too much sugar makes her nauseous. It still contains oligosaccharides which can upset your stomach a bit but they will be helpful to keep her stomach moving when she isn’t eating a lot. Diluting it will help.
Hang in there. It’s not really realistic that her team would have meetings but hopefully there’s some way for them to talk to each other.
Maybe try mango slices, avocado slices - things that slide down easily and don't need much chewing but still have plenty of nutrition.
Oh that's tough. She won't eat but will consent to a PEG?
This is what really worries me. I suspect she won't. Ol' boys' field so I'm staying out of it. I think that conversation is happening today.
Its a horrible spot to be in. She sounds incredibly strong and complex, and you're all trapped in this cycle of trying to do the best for her.
You've got a great grasp of what's going on with her, and realising when you need to stap back to protect your relationship and yourself.
There's not going to be a single simple answer for her, she is driving the bus while ignoring her long term needs and the people around her trying to provide support and direction. A PEG may just be the answer though. She can get the nutrition she needs to function and heal, without all the other pressures around food intolerances and dietary intake. But they're not great.... they leak, they change what clothing you can wear because the surgeons always put them in the wrong spot on women, they need replacing and there's trauma and pain with that.... its a tough spot to be in. You're doing an incredible job, if no one else is telling you that, we are.
Sincerely thank you for the kind words and your experiences. They are extremely helpful.
That sounds really tough on you.
I hope things will turn around for you and get better.
All the hugs… you’re doing an amazing job in a very difficult situation. Hopefully your mum will agree to a PEG or even NG tube, then when she feels better she might be able to eat more readily
I've got nothing to suggest that hasn't already been suggested by those more knowledgeable and experienced in this thread, but I feel for you mate 🫂 Hoping things improve for you all.